Readers should note that this document is a work in progress. Although it represents the cumulative thoughts of a quarter century of LOINC development, it also is just a beginning. This document reflects the input of many in the LOINC community, and we welcome your comments too. As our experience grows, we anticipate future revisions and will label them with versions.
We believe that these principles, while originating from the LOINC experience, are applicable to others developing open health terminologies. We have licensed this manifesto under Creative Commons Attribution 4.0 International Public License and encourage others to adopt these principles in their work.
We look forward to your participation as we continue building open data standards that enable the kind of health systems we believe are possible.
We imagine a world where people experience optimal health catalyzed by a seamless network of health information systems.
Our mission is to develop and advance adoption of open data standards that enable efficient transmission, understanding, and use of health data. We want to see open terminology standards integrated into every clinical information system that shares or aggregates data. Yes, it sounds audacious, but standards demonstrate the network effect and become more valuable as more people and systems use them. We are committed to a health ecosystem where data is available with open standards that unlock the potential for information systems and applications to improve health decision-making and care.
How do we approach this fundamental challenge?
We learn. As individuals and as a collective community, we apply a learning mindset to every aspect of our work.
What do we learn?
We learn to create, curate, and deliver data standards that make health data more portable and understandable to different computer systems. We learn to cultivate a vibrant community of practice that embodies our guiding principles and advances towards our vision.
How does this actually play out in our work?
Learning is the standard we expect of ourselves. We learn to be better each day. We look at each requested term, proposed edit, project, code routine, and task as an opportunity to learn more. By doing so, we grow as individuals and as a community. And we move closer to our goal.
The principles outlined here are the shared beliefs that guide our behavior as we develop and advance open data standards. Being clear about what we stand for builds cohesion and enables collective progress. They also serve as a beacon for others who share these ideals. And yes, they are ideals. Everyday reality is quite nuanced, and we admit to not always measuring up to the full ideal. But, we are committed to them, and are committed to continually improving as we go.
We use open development practices and are committed to fostering a diverse and welcoming community because we believe that it offers more unique perspectives, more great ideas, and will produce better solutions for health data interoperability. We are open with each other, being free to share opinions and challenge our own thinking.
In all of our work, we try to do right by others. We are considerate of differing viewpoints and experiences. We try to gracefully accept (and give) constructive criticism. Out of respect for others, we tell the truth (even when it’s hard) and are committed to making our actions match our words. We recognize that our success and progress is a collective result from the contributions of many.
We believe that foundational health data standards are a global good, and therefore must remain accessible to all people. Better health shouldn’t be limited by geographic, national, socioeconomic, or other boundaries. To that end, we want our community, standards, and communication to be clear, royalty-free, and approachable to all.
To grow is to be alive. We are committed to growth and evolution as scientific, medical, and technical knowledge continues to advance. We are pleased to welcome others into our community of practice. We want to facilitate interactions within the community that stimulate growth and engagement. We seek to grow as individuals too, choosing a mindset of learning, aspiration, innovation, and courage. We don’t rest on our laurels, and instead seek to improve continually.
Far too often health terminologies and other data standards are developed in a way that leaves them impenetrable, abstract, overly complicated, and ultimately not very useful in real clinical systems. In our decision making, we choose useful over theoretically perfect. As we explore new content, domains, and approaches, we are guided by empiric analysis from real-world systems and proven implementation successes.
Agility may seem like a surprising principle. Shouldn’t standards be stable? Well, yes. But they also need to stay nimble to be useful. Some standards development processes are so slow and cumbersome that their outputs are doomed to irrelevance. We want to move quickly to keep pace with advances in practice and knowledge, and when we see an opportunity for improvement or a mistake to correct. And we are keen to keep learning from implementation experience as standards are put to use. So we try to resist ossification and decision paralysis in our approach. This means avoiding unnecessary bureaucracy, layers, gatekeepers, or other structures that only raise barriers to action. Keeping the long term benefits of progress in mind, we strive for clear communication about changes to help smooth the inevitable burden of staying up to date.
Clearly, standardization requires a rigorous approach. Being nimble doesn’t mean we don’t hold ourselves to a high standard. And we want to avoid haphazard changes that cause needless pain for implementers. So we balance our pragmatic and agile perspectives with an equal commitment to best practices in biomedical informatics. We investigate matters thoroughly, welcome expert counsel, and are meticulous in our curation. We base our decisions on the best-available data, not ivory tower wishful thinking.
Using this Manifesto
We encourage others developing standard health terminologies to adopt this manifesto for their projects. Officially adopting the Manifesto for Open Terminology Development is one way to express and codify these values, and to signal your intention to make your health terminology content and community open and welcoming.
If you choose to join us on this journey, we'd love to hear from you. And, if you do use or modify this manifesto, be sure to include attribution.
This document is licensed under a Creative Commons Attribution 4.0 International License.